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Backsliding in recovery - Page 7

post #181 of 1017
Bonni, I am sorry to hear about your health issues. It must be very frustrating. I hope that you get better.
post #182 of 1017
Though you were less than nice to me when I was sharing my Bullrun experience, I am sorry to hear of your health issues.

I have never been through the amount of stuff you are going through right now, but I have had a fair share on injuries some of which will never fully heal. I agree with others about getting another opinion from a big city doctor, maybe seek out the top 5 in the specialties you require.

As far as the back and leg pain, perhaps the problem is lack of excercise. My old injuries always show their ugly head when I do less. Its a fact that the less you do, the more a bad-back will bother you. Laying down all day is the worst thing for back pains (muscle loss, disk swelling). From my experience its also not good for knee problems (of course over working it is counterproductive). Well thats my 2 cents, I hope you find some relief and I wish you a more speedy recovery than you have had so far.

Hey if you cant ski this season...there's always tubing
post #183 of 1017
Bonni, your last post is a very well-written summary of what your health issues are at this point. Seems like your off all the meds except for the narcotic patch - this may allow your body to heal up more naturally, and, after a while, at least any remaining conditions will not be attributed to a potentially toxic cocktail of conflicting meds, which should help a new doctor make an accurate diagnosis.

For the constipation issue, it might help to buy flax seeds at a bulk store which are cheap, grind up a small quantity in a coffee grinder and then put it in cereal, or mix it with Gatorade or a juice. This will provide fibre and omega-3 essential oil.

I'm also wondering how much exercise you are getting. Try to walk outside as much as possible. It will help your conditioning and should make you feel better. Hang in there!
post #184 of 1017
Although you've never been particularly nice to me, I'm terribly sorry to hear about your health issues. I can't even imagine being in so much pain for so long. It must be terribly difficult for both you and skier_j. Nonetheless, you sound like you've maintained a strong attitude through this ordeal. Kudos to you. I can only hope that things will improve soon, and I send you my heartfelt wishes for a speedy recovery.
post #185 of 1017
Thread Starter 
I suppose I could say, "I wasn't nice because I was in pain", but that's just not true. I'm just not nice sometimes, just like everyone else can be....I admit it. Specifically pointing this out makes you, also, not nice. At least you're in good company.

I probably get too much exercise. Everyone I know is Constantly telling me to REST,SLOW DOWN, and all that goes with it. I get tired of hearing that. I'm not one to sit on my duff (although it is substantial anymore). I tend to do more in a day than most people do in a week, so the lack of exercise is not the problem. I've done lots of ladder work, and that's not a cakewalk when you're 2 stories up.

If anything, I've overdone it. But while I was, it didn't get worse. It just maintained.

Flax is a definite possibility. Spinach does it for me. And I like it, so it's on the menu.

I wish I qualified for the adaptive skiing scholarship!
post #186 of 1017

Your last post triggered a thought with its reference to the rod in your leg. There are rare but documented cases of titanium allergies which have produced the symptoms you have, including tumors and severe pain. Is it possible that such an alergy coupled with your autoimmune disease (MS) could be creating such a strong reaction? Metal allergies can be diagnosed with a simple skin patch test. It is certainly a long shot, but it looks like all the easy ones have been taken.

My mom has MS and the simplest of things can cause the strangest reactions. Some are so simple that it takes forever to discover them, and it takes getting in tune with your body and analyzing everything. It also takes her months to get back on track, especially after surgery.

Keep up that can do spirit, we are all pulling for you.
post #187 of 1017
Thread Starter 

What a thought! I asked the doctors this at some point, but it was pooh poohed. I'm allergic to gold and silver and the back of my stainless steel watch makes me break out in a rash and itch if I don't take it off within a day. I can't wear most jewelry, but I can wear platinum...my ring is made of that, and it's the only metal I can wear without a problem......or is it?

It's entirely possible!!!! I'll make some phone calls now. THANKS for the tip!

Edit: called the orthopedist, my PCP and the doctor in Idaho who fixed my leg. Waiting for callbacks. Regardless of the kind of metal, I am going to insist on allergy testing for it. An allergy to that rod and screws would explain the whole thing and why we can't find anything wrong. LeRouge, I'll owe you a lift pass if this works!
post #188 of 1017
LeRouge, that was good detective work.

Bonni, being that you are allergic to some of the most antiallergenic metals known to man, this sounds to be very possible. Good luck with that.

FWIW, I have always been a firm believer in removing the hardware once the bone is good enough to be without it.
post #189 of 1017
Thread Starter 
R-R, that was always in the plan for Spring....to remove all the hardware after ski season. Looks like it may happen earlier than that if this is the case.
post #190 of 1017
Thread Starter 
Update: Doctor called me back at 5 and we discussed the allergy test. He's calling the lab tomorrow to see if we can do that here or send it out to have it tested. Jeff found a website whose company does testing. Quite interesting! http://www.melisa.org

As a painter, I'm immersed in titanium dioxide every time I get paint on me (which is considerable). It's in toothpaste, dental fillings, candy......a light bulb is going off. I am soooo hoping this rod has pushed me over the edge. I'm not religious, but I've been preying (my mom's spelling!! EEK) this is going to help solve the puzzle.
post #191 of 1017
Originally Posted by Bonni View Post
Update: Doctor called me back at 5 and we discussed the allergy test. He's calling the lab tomorrow to see if we can do that here or send it out to have it tested. Jeff found a website whose company does testing. Quite interesting! http://www.melisa.org

As a painter, I'm immersed in titanium dioxide every time I get paint on me (which is considerable). It's in toothpaste, dental fillings, candy......a light bulb is going off. I am soooo hoping this rod has pushed me over the edge. I'm not religious, but I've been preying (my mom's spelling!! EEK) this is going to help solve the puzzle.
I can't sleep, so I was reading this and became curious (I recently had a titanium implant put into my toe). Even if it turns out that you aren't allergic to titanium itself, it's likely you could be allergic to an alloy in the rod:

Allergic potential of titanium implants

Schuh A, Thomas P, Kachler W, Göske J, Wagner L, Holzwarth U, Forst R.

Orthopädische Klinik Rummelsberg, Schwarzenbruck. Schuh-Alexander@t-online.de

AIM: The aim of this investigation is to evaluate the allergic potential of titanium and titanium alloys for surgical implant applications.

MATERIALS AND METHODS: Discs cut from rods supplied by five different titanium suppliers in several diameters were investigated. The samples were cp-Titanium as well as Ti6Al4 V and Ti6Al7Nb, 6 mm thick with a diameter of between 6 and 60 mm. The material was checked by optical spectral analysis.

RESULTS: In all samples except iodidtitanium, a Nickel content of 0.012-0,034 wt% could be detected.

CONCLUSION: The low nickel content in the implant material results from the production process. The nickel atoms are in solid solution in the titanium lattice. Nickel allergic patients may develop hypersensitivity reactions even due to this low nickel content. Hence, this reaction may be falsely attributed to the titanium material itself. Measurements of ion concentration in the body are helpful for quantifying the maximum content of nickel in titanium materials for surgical implant applications. In addition, technical questions related to the production of nickel free titanium materials for allergic patients have to be solved.
post #192 of 1017
Thread Starter 
An exact description of the rod has been requested.

The Fentanyl patch is not calming the pain, and it's been 24 hours. I am at a loss again. This stuff is supposed to be 80 times as potent as morphine. I slept well last night for the first time in Months, and that is something awesome, but I've had headache and stomach pains all morning.
post #193 of 1017
Bonni, I certainly hope the solution is as simple as an allergy to the metal alloy in your leg.

But until then, has anyone tried Gabapentin/Neurontin on you for your pain? It was a silver bullet for me because it works on nerves and the vet just prescribed it for my dog with spondilosis (sp?). I'm not a doc, but with all this intense pain going on, I would have thought this would have been tried out.

I really hope the problem is the rod, I can't imagine how absolutely horrible it's been for you.
post #194 of 1017
Thread Starter 
I got a call from my doctor and he said it could take up to 3 days to feel better, and if it's not working well by Sunday, wear 2 patches. Yeeps.

I was a juror in a trial a couple of years ago, and the plaintiff had spondilosis. I feel for your dog, because that's got to be the worst pain. Any movement at all exacerbates it. I'll let this drug have a chance and ask about it next visit.

We are setting me up with an allergist on Monday (the one in town is only here Monday, Tuesday and Thursday. There isn't even a full time allergist in town!). It might be wise to travel to Albany NY for one.

The doctor who implanted the rod called back, said it was titanium, but didn't know if it was an alloy. I got the number of the company who makes them and called them. The rod and screws are an alloy of titanium, aluminum and niobium. At least we know what to test for. I'm being as proactive about my health as I can be right now.

I went to my neighbor's house today and helped her organize her basement toolbench and shelves just to get out of the house and I was hoping it would help me feel better, but I was almost cramped up double.

Throughout all this, I've tried to be an UPBEAT person, but I'm only human, and I know I've failed at this more than I've been happy. I know all things must pass, but if I've been short, then I apologize. There is no dawn on the horizon yet, and no guarantee of one, but I'm hoping something will happen to become normal again. I just can't be on Epic while I'm in this agitated state, because I'll take it out on everyone else.....I know me. I'm a horrible person.

One day at a time.
post #195 of 1017
I have nickel allergies and experience painful lesions if my skin is in contact with nickel containing alloys. The reaction of my body actually dissolves brass plating on belt buckles exposing the base metal. I actually have to buy nickel free watches and belts. I can just imagine what would happen if one had an allergy to an implant of metal. BTW that is the ONLY material I ever list as an allergy or sensitivity on medical forms. Could all of these problems be just a coincidence since your broken leg? I doubt it. What a blessing if a chance encounter on an internet forum gives you the answer.

Regarding the Melisa test, you can privately contract for that analysis and send the blood sample.
post #196 of 1017
Holy crap Bonni. I can't believe you're still so ill. It must feel like it's never going to end. Keep fighting it, don't give up.
post #197 of 1017
Thread Starter 
Hi ant!

Life isn't much fun anymore, it's true. I mark time one hour to the next, and it's just grueling.

Last night I couldn't eat. My stomach was hurting like I was stabbed, and it came with a backache and headache. Jeff called Doc Oscar (the ER doc who is liaison for his work), and he said I could go back on Entocort with this patch. I went to bed and finally fell asleep about 2 am.

I woke up feeling the best I've ever felt in weeks, but it lasted only an hour or so. Back to being hungover.

I cry a lot. It's from frustration.... and pain. You live long enough with prolonged pain (and I'm not talking about the occassional headache and flu-like symptoms, either), and your whole body reacts to that, and it isn't pretty. I think the worst part is that no one is saying, HEY! It'll get better. Or HEY! This will take care of the problem.

It's gone beyond that in that I have doctors shoving me out the door with things like, "I don't know what to tell you. We can't find anything." That's not a hopeful thing to hear.

I decided last night that I would leave small town doctoring to the people with nothing more than sprained ankles and ingrown toenails and go to a more sophisticated setting. I need help, and I'm obviously not getting it here. My PCP will sign referrals getting me to any facility in New England. A larger hospital might have an answer.

We're supposed to go to Georgia for Thanksgiving, and then spend Dec. 14-26 in Spokane. That gives me 2 weeks to get something arranged. I hope we can find out something in that time.
post #198 of 1017
A few words from someone who spent a bunch of time on heavy opiates last year. Be very wary of these things and especially stuff as potent as fentanyl. They are mondo-addictive. They can have major side effects while you are taking them - gastric, emotional, etc. And when you start dropping the dosages, life can get very ugly. Anyone who gives you a line about about "dependency" vs "addiction" and how pain causes you to metabolize opiates differently, blah, blah, blah has not lived withdrawals after "dependency".

When you lower dosages or stop this stuff, everything from headaches, mood swings, chills, diarrhea, constipation, shivers, hot flashes, massive runny nose, crazy sneezing, and more can become part of your life.

I was on opiates for two months in 2006. The peak week or two (after I woke from my coma and knew what was going on anyway) looked like 1200 mics fentanyl, 45 mg long release morphine and about 8-16 mg dilaudid a day. Near the end of my hospital stay I weaned down to 15 mg long release morphine and a couple vicodin a day. Even so, when I fully dropped off the drugs, I spent a week curled into a ball cycling through all the above symptoms, and then some. And another week or 10 days doing a milder set of same. And then minor reruns at random times for a month or two.

Just be aware that some of these drugs can have weird effects while you are on them. And some will hit you hard as you drop off them.

Regarding fentanyl, check out http://www.nlm.nih.gov/medlineplus/d...r/a601202.html (one of the many cloudpeak has at her fingertips & suggested after researching what they were pumping into me last year) It is serious stuff. And headache can be among the side effects (definitely read the side effects stuff in the link). I'd be cautious about someone just saying "use two".

We hope you find a doc who can help you sort this out. And that the added issues of these drugs don't compound your woes too much. Get better & feel better...
post #199 of 1017
Thread Starter 
Duly noted, Spinner.

So far, slight relief of the headache, and the Entocort combination has taken the stomach pain to a tolerable level. I don't want to live on this crap, but I don't want to sit in a chair grimacing and crying all day, either. I'll take the withdrawal if it means having some kind of life in the meantime. Sometimes drugs are necessary.
post #200 of 1017
Oh Bonni, what a mess! You do have an incredibly positive and uplifting attitude about things even when you think you're being cranky!

I hope you find some doctors who can actually help you. I think you're right looking to some major clinics or teaching medical centers rather than the local docs at this point. Best of luck and don't give up on planning to make some turns again.
post #201 of 1017
Go Bonni go go, go Bonni Go go, Bonni be good..........
post #202 of 1017
Thread Starter 

Ya'll have a peaceful and memorable holiday weekend.
post #203 of 1017

I wish there was something I could do to help. My business partner has been sick for a year, and next to you I haven't seen such a case of bad luck. Today, I spent the day in the emergency room with him. When I came in the office he was disoriented and had blurred vision. When his wife relieved me, they still had not taken him for a CT scan. They think he may have had a TIA or a stroke. He is 46.

Have the best Thanksgiving possible. I have to think that your upbringing has given you the strength to persevere through these ordeals.

post #204 of 1017
I'm watching this thread now, hoping for some good news.
post #205 of 1017
Hi Bonni -

I've been playing and posting about *tennis* all summer, and just returned to see your saga. Yuck! (I expected to be reading about your trail-running fun for therapy and I see this mess...!)

The comments about Mayo and Alternative avenues, remind me of family and friends with similar "mysterious" illnesses.

a) If the medical approach is your preference, look into the Guthrie Clinic, in PA. It has nearly the (if not the same) prestige of Mayo. It's closer to you. My dad (Albany) would go there....

b) If Alternative is something you would explore, look for a clinic where Naturopaths, Accupuncturists, Chiropractors, etc. all work together ... or at least are free about referring back and forth.

c) The metals "thing" reminds me of my wife. The MDs here thought she had MS. A Clinical Knesiologist (kinda like a ND & DC combined) had her start detoxing the metals from her system and over the course of about five months her (formerly) high energy returned ... her mental acuity picked back up ... and her headaches all but disappeared. (The most dramatic change happened when she had her mercury amalgam fillings removed and replaced with compounds pre-tested NOT to cause her problems. This is something 95% of Dentists refuse to acknowledge, but there's a significant anti-mercury crowd in alternative health.)

It sounds immediate to key it on a forum, but it took lots of time, attention and money. But I have my wife back, so it's worth it to me.

I pray you will be healed of all this mess.

- KK
post #206 of 1017
Originally Posted by Kaptain Karl View Post
a) If the medical approach is your preference, look into the Guthrie Clinic, in PA. It has nearly the (if not the same) prestige of Mayo. It's closer to you. My dad (Albany) would go there....

b) If Alternative is something you would explore, look for a clinic where Naturopaths, Accupuncturists, Chiropractors, etc. all work together ... or at least are free about referring back and forth.

This is such an important, but often lacking or completely missing component to solving health problems.

One of the worst things any healthcare professional can do is take on the arrogant attitude of "Don't go there... come to me instead." Unfortunately, I see this all to often, especially with MD's and PT's.

Some people may need multiple approaches together to overcome their problem(s). And it may take some time... several months or years in some cases. I see this quite often as well, and wonder how many patients who quit treatment after a short period of time "because it didn't work for them" would actually get results if they gave it a chance over a longer period of time.

Hang in there, Bonni. Sending good thoughts your way.
post #207 of 1017
Thread Starter 
The allergist doesn't test for metals......so that was a wasted appointment! I got up early and travelled 40 minutes on the Masspike in the rain yesterday for nothing. :

I told the secretary when I made the appointment what it was for, and they scheduled me anyway. The doctor was a very nice and attentive man, and we had a nice half hour chat. He asked one of his staff to call for an appointment with the dermotologist across the hall. She said she would call me when she made that appointment.

When she didn't call by the end of the day, I called back. She hadn't made the appointment yet, citing the reason "There are a lot of people who need appointments." Well, hells bells, are all of those guys wearing morphine patches and in pain every day? Get on it!

When they still hadn't called by 3 pm today, I called and got the number and was going to make the appointment myself. We'll be in Spokane for 2 weeks before Christmas, and I have a narrow window to do things in before we'll be looking at January for appointments, and I want to get things done before I go totally nuts.

I call the derm doc, and am told that I can't make an appointment. It has to be made by my PCP. She never even asked if I had insurance.:

There was no arguing with her, so I call my PCP, get the answering machine (they never just take your call), and they never called back by the end of the day. I can't understand why it takes DAYS just to actually get and appointment.::

On a brighter note, I called my orthopedist before Thanksgiving and he called me at home tonight at 8 pm. He said there is a possibility that I could be reacting to the rod, but it was a very small chance. However, we had discussed removal almost since the first visit, and he's more than happy to remove the rod. "One less thing to deal with" was how he put it.
So we're going to schedule this surgery sometime in January and take the hardware out.

Since September 2006, I will have had 3 colonoscopies, an endoscopy, and 5 surgeries (foot, meniscus tear, broken leg, tumor removal, hardware removal), and enough shots, blood tests, stress tests and medication to kill the average person. And I still feel like ****.:

There will be no skiing for me this year. I will definitely need some anti-depressants.
post #208 of 1017
Sounds like enough to kill TWO average people. I'm glad you're getting that rod out. Then you'll know, won't you?
post #209 of 1017
Thread Starter 
I'm going to use this thread to vent. It's either vent or injure some morons.

I called my PCP today to see if he has made the call to the dermatologist and he's not in today! Argh!:

So I called the allergist back, got the secretary who schedules and told her that I can't do my own scheduling and why, and told her to call them and schedule this appointment. The response? "I thought I already did that. I'll call over there and check. What's your number, I'll call you back."

Yeaaaaah, I'll bet you will. I have to see the gastroenterologist in 90 minutes, and it's an hour drive to see him, how much would you bet on her returning my call with an appointment......today? I wouldn't bet on it.

The gastro doc wants to do another colonoscopy. I am not willing to do that before I get this test. After 2 regular colonoscopies, an endoscopy, and swallowing a pillcam, 3 different doctors didn't find anything. What makes you think I want to chuck out yet another $250 for a 4th shot at it? Doesn't that just make me stupid? It sure feels that way.

Meanwhile, I'm still waking up in pain and walking around all day with it. I tried leaving the old patch on when I put on the new one while we were on the road over Thanksgiving, but all I did was itch all over, and I still felt like crap. Wearing 2 patches may not be any better, but now that I'm home, I may give that a shot. Something has to take this away. Now I know why people use harder and harder drugs. I'd take some heroin right about now if I weren't so chicken shyte.
post #210 of 1017
Thread Starter 
It's a miracle! They did call back to tell me I have an appointment for the metal patch test......in February.:

Another unacceptable situation. 2 1/2 month wait? Get real. So I called over 15 other dermatologists in the Western Mass area, and got the same story:
*We aren't taking new patients till May (very popular response)
*We can put you on a cancellation list
*We are not taking any new patients at all.

I called a doctor just over the border in Vermont. "Can you come in next Thursday?" I ask if they will test for the metals I need tested for. She puts me on hold and comes back with a YES. Bingo!!

Since Massachusetts made it LAW that everyone have health insurance by the end of this year or face monthly increasing monetary penalties, everyone is now covered, and they are making the appointments they couldn't do before. This state has more or less screwed the already insured. Instead of the 2 week wait, it's more like 2 months.

Progress? You decide.

On a stranger note, our neighborhood has fallen apart this week. Since Thanksgiving, across the street at Jimmy's, his mom died of cancer at home (she was 92), my next door neighbor was taken to the hospital the next day, and was flown to Boston this morning with fluid on the brain and in an unresponsive state, one of the drunks at the end of the block was taken out in a body bag yesterday, and the older guy kitty corner to us who had a heart attack in September is now in a nursing home and not expected to come home at all.

Maybe it's the neighborhood!!!:
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